Off Prednisone but still feeling new type of pain

It took me a year to feel better off prednisone. Much has been said how we feel afterwards. Fatigue was my big issue. I also had aches and pains. 3 years later I still have them . There is an adrenal fatigue that I believe happens to our bodies after putting it under so much stress. I was also 69 and now 73. So that doesnt help. I cant say for sure you dont have something else going on but I think were all in the same boat to some degree. Seems like I need an alleve in the mornings to get going.

I’ve been coping with all of those things since stopping prednisone four months ago, after 15 months on prednisone.
Initially I felt worse than I’d felt in a year, but my adrenals slowly kicked in after a few months. My solution has been to take presumably safe amounts of Tylenol as needed. I’ve slowly been improving in the sense that I can wait longer and longer between doses and have gone from three 500 mg extra strength Tylenol tablets a day to currently one 650 mg Tylenol for arthritis tablet in the morning and one 500 mg pill in the evening. I’ve basically been experimenting with how much I need for comfort and when are the best times to take it. So I pretty much just take it when I start to feel uncomfortable, preferably before I feel too uncomfortable.

My only side effect as far as I can tell is occasional indigestion.That has mostly gone away since I started drinking kefir, usually just a little in the morning, or as needed if I start to feel indigestion, bubbling up.

Keep in mind that during the period of time that you were on prednisone, you were still aging, so a lot of those things could be unfortunate side effects of getting older. Which makes exercise and keeping up, or in my case rebuilding strength so important. I was 69 when this whole thing started, 70 when diagnosed, and am 71 now.

@noti
Thank you. This is helpful. I will try the Tylenol again but when I did in the past I did not get relief. Perhaps I need to use more like you were doing.
I was 59 when PMR hit. Now I’m 63. I agree what you are saying about aging but in my case the change is drastic. Has anyone else thought about how it could be Prednisone that caused a lot of joint and muscle damage? I just keep hoping it’s reversible somehow.
. We know of course it causes bone damage (osteoporosis). I have heard cases where the osteoporosis was reversed with proper supplements and exercise. My osteopenia held steady during the Prednisone years.
I wonder why no doctor will explain where these pains are coming from and how to treat

Oh I forgot to mention. I have been going down all sorts of rabbit holes trying to figure out the source of the pains and treatment. I looked in Polymaalgia and also Long Covid. Doctors say no to Polymyalgia but don’t discount LC because the medical community does not know enough about it yet.
I’m also now exploring hormone balance and metabolism treatments. Also peptides. Could be a dead end as well.
I’m in denial that this is how it has to be for the rest of my life.

I was initially feeling so much worse after tapering and then stopping prednisone that I was exercising less, and I believe that I became so weak at that point that I was actually injuring myself. That's when I went back to physical therapy. I didn't really improve until I realized that in my case I had to put up with a certain amount of pain during and after exercise to be able to rebuild my strength.
Good luck, I hope you can find a solution that works for you.

I have exactly the same symptoms, @abbyc. Sore in the morning. Gelling throughout the day, but once I get going, I’m pretty functional. It’s not like PMR, in that it’s not symmetrical and it’s different joints. For me, neck and knees, as opposed to hips, shoulders and hands. Also the gelling is different. With PMR, movement just exhausted me and the pain was there every time I moved. I am treating it with naproxen (Alleve) right now, but I’m a little tired of complete sobriety. And it has become less effective. The rheumatologist wanted to put me back on 2mg of prednisone, but I’m going to give it a year and see what happens. I’ll try Tylenol next, but it has not helped in the past.

@abbeyc Yes, on prednisone for 3 years. Down to 1/2mg as of today. Hip and shoulder pain that feels different than PMR. X-rays and hip imaging show some wear but inconclusive. I still bicycle. Hiking not as much as I used to before and during first two years of PMR. Some weight training. I used to practice quite a bit of yoga including unassisted handstands etc. I stopped practicing yoga less than a year ago. I occasionally take 650 mg Tylenol. I am 64 year old male.

@noti yes I can agree with that. I also went to PT for a while. I’m pushing myself at the gym
It’s the daily aches and pains that annoy me. My 94 year old Mom gets around better than me

@oxzab thanks for sharing.
Will this ever end?!

@54pontiac yes we sound very similar. My pains move around. Lately my knees bother me to wear it difficult to bend and stand

I had ChapGPT draw up a PT type strengthening exercise routine for me based on these symptoms. He knows I had PMR 😆. It focuses on knees, shoulders, arms.

The other odd place I have a lot of pain in the morning is in my hands. 🙄

I had a lot of neck pain also. I’ve been getting deep tissue massages which have helped there a lot.

My orthopedic doctor can’t believe how tight my back leg muscles are. He recommends magnesium which I’m already taking plenty of.

I saw functional doctor. She recommended GP157 peptides for 3 months but it’s quite expensive.